Liviah’s New Liver

The story of a family struggling with the mysterious hepatitis

It was three days before Christmas, and Elizabeth Widders was in her upstairs bathroom, fixing red and green curls in her 4-year-old daughter, Liviah’s hair. But as Liviah stood in the morning light, her mother noticed that the whites of her eyes had turned yellow.

She rushed Liviah down to ask her husband, Jack, for a second opinion. He saw the yellow tint in her eyes, too.

Liviah, her brother and sister all had jaundice as babies, and their parents, who are from Mason, Ohio, were familiar with the telltale signs. “I knew it was a liver problem,” recalls Elizabeth Widders.

They took Liviah to the emergency room, where she was diagnosed with acute hepatitis, liver inflammation. Less than two weeks later, doctors removed his failing liver and replaced it with a new one.

A recurrent issue

Over the past eight months, hundreds of other families have been caught in a similar whirlwind, with their otherwise healthy children contracting hepatitis, seemingly unexpectedly.

Some 650 probable cases have been reported in 33 countries, according to the World Health Organization. At least 38 children required liver transplantation and 9 died.

These cases have puzzled experts, and they are investigating various potential causes. One of the main hypotheses is that an adenovirus, a family of common viruses that usually cause flu-like or cold-like symptoms, could be responsible, but many questions remain.

The revelation that Liviah’s case could be part of a larger phenomenon galvanized her parents, who began telling their story in hopes of educating others about the major red flags.

Experts point out that these cases are extremely rare and that, even in this context, most do not require a transplant. “The risks of such a thing happening are extremely low,” said Jack Widders, father of Liviah.

But without a solid explanation, it sounds like a lightning bolt that could strike any family.

Where could she have caught hepatitis?

The first signs of trouble appeared on December 11, when Liviah started vomiting. At first, her parents blamed it on overeating: Liviah had spent the previous night at her grandmother’s house, who was known to spoil children with treats. Parents called it a “grandmother’s hangover,” recalls Elizabeth Widders.

Liviah, a lively and athletic child, recovered quickly, but the next day her 6-year-old brother, Jaxson, also fell ill. He had a high fever and remained ill for several days. Liviah, who went back to school, visited a trampoline park and decorated cookies with the neighbors, seemed to have avoided the worst.

Until, a week and a half later, her mother noticed her eyes. Her urine was also orange, Liviah told her.

The hepatitis diagnosis was a shock. This disease can have a wide variety of causes, including exposure to toxins, excessive alcohol consumption, and hepatitis B and C viruses, which are often associated with intravenous drug use.

M^me Widders stares at her husband in disbelief: “Where could she have caught hepatitis? (Hepatitis can also be caused by other viruses, but M^me Widders didn’t know it at the time.)

That evening, Liviah was admitted to Cincinnati Children’s Hospital Medical Center. “She arrived in acute liver failure,” said Dr.^D Anna Peters, a pediatric transplant hepatologist who was part of Liviah’s medical team. “She was very ill. »

Over the next few days, Liviah’s condition deteriorated.

One of the primary roles of the liver is to process toxic substances, including ammonia which is naturally produced in the body; when the organ is not functioning properly, these toxins can travel to the brain, causing cognitive and behavioral changes.

As Liviah’s ammonia level rose, she became irritable and enraged, yelling at her mother without any provocation.

Damage to his liver, which produces proteins that help blood clot, also slowed his natural clotting, putting him at high risk for bleeding problems.

Doctors gave Liviah steroids to reduce inflammation and a compound called lactulose to help flush out ammonia.

She underwent blood transfusions, CT scans, ultrasounds and a liver biopsy. Liviah’s parents slept in the hospital, while relatives cared for Jaxson and their 1-year-old daughter.

Liviah spent part of Christmas Day sedated, but woke up long enough to open a few presents, including the Hungry Hungry Hippos game. “She doesn’t remember much about Christmas, but she knows Santa came,” Jack Widders said.

Top of the list

Despite treatment, Liviah’s clotting problems persisted and her ammonia levels remained elevated. She woke up restless and confused. She asked the same questions – could she go for a walk? Where was his brother? – again and again. She could barely finish a game of Candyland with her heartbroken grandmother.

“Watching her deteriorate rapidly before our eyes, we wondered how long we had left together,” her mother recalled.

On December 28, doctors broke the news: Liviah had been placed on the transplant list. Status 1A – top priority.

The doctors decided to put Liviah on liver dialysis to remove some of the toxins from her blood until she was matched.

The call came a few days later when Liviah’s aunt was visiting. Elizabeth Widders put the transplant coordinator on loudspeaker: they had a liver for Liviah.

It was a complicated time for Liviah’s parents, their joy tempered by the grief of the deceased donor’s family.

“We were staring death in the face,” said Elizabeth Widders.

“It’s true,” replied her husband. And so, we knew our joy was at the expense of…”

“Someone else’s selfless ‘Yes’,” she continued. Someone else’s tragedy was our miracle. »

1^er January, Liviah received her new liver. The next day, the doctors got her out of bed to regain her strength.

On January 12, Liviah was discharged from hospital. Back home, the Widders family celebrated Christmas again, and the neighbors saved their decorations for Liviah. “There was one night when everyone put them on, says Elizabeth Widders, and we were able to walk around and see the lights. »

The search for a cause

From the start, doctors had warned Liviah’s parents that they might never know why her liver was failing; in many cases of pediatric hepatitis, clinicians never find the cause, says Peters.

In Liviah’s case, doctors ruled out a variety of common triggers, but blood tests revealed a possible culprit: an adenovirus.

Although there were no signs of the virus in the liver, an adenovirus infection could have “triggered an abnormal immune response which then attacked the liver,” Dr.^D Peters.

This is not a completely satisfactory explanation, she conceded. Adenoviruses do not generally cause liver damage in healthy children, and Liviah’s adenovirus levels were low.

The mystery did not scare Liviah’s father. “I left the hospital thinking, ‘You know what? She is alive,” he said. I don’t really need to know what caused” the hepatitis.

So far, more than 200 potential cases of hepatitis have been reported in children in the United States, according to the CDC. Many of the affected children tested positive for an adenovirus – in many cases, adenovirus type 41, which usually causes gastrointestinal symptoms.

But the virus hasn’t been found in all affected children, and scientists aren’t exactly sure why a common childhood virus could suddenly cause liver damage.

They are looking to find out if the virus has changed and if other factors may be contributing to the phenomenon.

It’s possible that prior coronavirus infection — or, conversely, lack of adenovirus exposure during pandemic shutdowns — made children more vulnerable, though both of these hypotheses remain speculative.

It’s also possible that adenovirus infections have always caused hepatitis in a small subset of healthy children and that scientists are only now recognizing the link.

“Is it about increased awareness? “said the D.^r William Balistreri, director emeritus of the Cincinnati Children’s Hospital Pediatric Liver Care Center. “Is this a new virus? Is it a new virus in synergy with an old virus? He added: “I don’t think we can rule out any of these theories. »

A new goal

In the months following Liviah’s transplant, her parents encouraged friends and family members to register as organ donors, and they organized a blood drive on Liviah’s behalf.

Liviah also helped her mother make earrings which she sold to raise money for the hospital’s Liver Relief Fund, which helps families of children with liver disease.

“We are going down this path that we have chosen,” said Elizabeth Widders.

The family is still adjusting to a new normal, which includes immunosuppressive drugs for Liviah – to prevent her body from rejecting the new liver – and renewed attention to hygiene to protect her from further agents. pathogens, to which it is now more vulnerable.

But Liviah went back to kindergarten, soccer and dancing. At her school’s recent beach day, she wore a bikini so she could show off her 8-inch scar. She calls it her “princess mark”.

This article was originally published in the New York Times.